Visiting Ava

Perhaps some grace can be bestowed upon people who have a blog and then abandon  it for months and months.  I of course am one of those people, and even though I’ve been busy composing blog posts in my head, you can’t read them if I don’t type them out!

And the honest truth is that I’ve been holding back because I’ve been feeling this pressure to make every blog entry deep and profound.  This is a burden that I and I alone have placed upon myself since our Ava journey and her death.  I ask myself, ‘Are people really going to want to read my trivial and somewhat meaningless entries?’   And then I tell myself “No, they wouldn’t”, and I walk away.   But let’s be honest, I’m not writing for the masses, I’m writing because it’s in me to write!   It’s something God has put in me to do that I love, so I have to let my go of my misgivings  and just write because I can, because I have a blog and I’m allowed to… so there!

So I might even attempt at posting a trivial entry sometime soon, this entry however is not.  Kinda ironic really.

This post is about visiting Ava, which as you can see from the picture below is what our family calls our visits to Ava’s grave. We all pile in the car and on the way there I feel sad, but I also experience a slight form of anticipation like I’m going to be near my baby again.  I get out of the car feeling a little keyed up, and then a few moments later I’m standing at her grave and I realize once again that I’m not feeling it.   In fact I’m having a really hard time feeling connected to this granite slab with Ava’s name on it.   Sure I’m standing over her… rather macabre.. standing over what’s left of your daughter..  but where is the sense of connection that I’m looking for?

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That connections not there because Ava’s not here.  This is just her memorial, the stone that we have erected to let the world know that we loved her and remember her.  It’s in a sense her little place in the world, but it’s here because she’s not here.

So where is she?

Well, since most of the western world today who acknowledges a God believes that every good person who dies automatically goes to heaven, most people would affirm with me that that heaven is where Ava is.

But for those of us who are followers of Jesus Christ and believe the Bible as the perfect and unerring word of God,  there aren’t actually any verses or even a verse in the Bible that clearly and definitely say that babies or small children automatically go to heaven.  Crazy right?  And to make it even more confusing the Bible makes it very clear that when we are born we get our own share of Adam’s sin often called ‘original sin’ and therefore we are all born sinners and from day one are separated from a good and perfect and just God who can tolerate no sin.   So now we have a problem because the Bible also tells us that there is NOTHING we can do to save ourselves,  nothing at all.  Not a word or a good deed or the power of positive thought or anything that could clean us up from this sin and shield us from the wrath of God and eternal separation from Him.  But then we are given hope… Jesus appeared on earth.   God in the flesh and He came among us and taught us and showed us a way to be right with God again.   This was through the work of the cross when Jesus died for us, and took our place and our punishment and bore our sin on the cross and paid the high price sin demanded, and then rose again!   Completely victorious, conquering death and sin, AMEN!   So the Bibles says if we believe in Him and accept His free gift of salvation, His blood will remove our sin and save us so that we can go and be with God in heaven for all eternity.

Um… so again that leaves us with a problem.  Because even though salvation is a free gift, we have to accept it.  Romans 10:9-10 says that we have to confess with our mouth that Jesus is Lord and believe in our hearts that God raised him from the dead in order to accept this free gift, which works for me, but how in the world was my 8 month old baby supposed to be able to do that?   How could she confess with her mouth that Jesus is Lord and ask forgiveness for her sin?   She obviously couldn’t, she was completely incapable.  That little baby that suffered so much in her short life, wasn’t able to take those steps to save her soul.  So it’s done then?  We are out of options?  Ava’s not in heaven?

Hold your horses!!!

The Bible is very clear that God gives salvation as a free gift and that He alone is sovereign.  And God is good… didn’t we see that all through Ava’s story?   And from the moment Ava died in our arms and Jason prayed that soul into heaven we have known in our hearts exactly where she was.  She is in heaven!  We believe this to our very core.  The same God who gave us the grace to endure her illness and eventually her death, who gave us joy through it all and never left us alone will be faithful to the end.  How could it be otherwise?

Our church has been working through the book of Romans and the past few weeks have dealt with original sin, so our beloved pastor Norm (who did Ava’s funeral service) was so kind to post this information on our church’s website last week regarding babies just to clear up this often muddied point.   Here are the reasons he gives for babies going to heaven when they die

  1. God is good and always does good.
  2. God is just and always judges justly.
  3. God is merciful.
  4. God is abundantly gracious.
  5. Salvation is always, for any who are saved, entirely an act of grace, a ‘free gift’ (Rom 5:15-17), and even our faith – necessary to believe, is a ‘gift’ from God.  So salvation is 100% a work of God applying Jesus death and resurrection to us by grace.
  6. We believe God applies this grace to those we are discussing who have never personally sinned, covering their original or imputed sin by Jesus atoning work on the cross.  God does this entirely by grace as well, without their having faith.
  7. Plus it appears when final judgment is discussed in the Bible those sent to hell for eternity are sent their for their own acts and attitudes of sin (Romans 1:18-32, Rev. 19, etc.)

For further reading on this I would recommend the following:

  1. Dr. Albert Mohler’s article HERE
  2. Dr. John Piper’s short article HERE
  3. Dr. John MacArthur’s three in-depth sermons HERE (you can read the sermon manuscript by just clicking on the sermon title or listen to the sermons by clicking ‘high’ or ‘low’).
    And I want to add that John MacArthur has also written a book I love, “Safe in the Arms of God“,  a must read for anyone who has lost a child.

I read those points from Norm and I want to yell “AMEN” from the top of my lungs!   And I read those articles as well and they resonate with my heart and my mind and what I take from them is that I  completely trust in God’s love and faithfulness to care for these little ones, when they couldn’t do anything to possibly save themselves.  He is just and good and I am to have no fear that Ava is anywhere but in heaven for eternity.  And she is there not on her own merit, but only by the mercy and grace of her creator who could do for her what she could not do for herself.

And so I’ll continue to visit her grave, even though I don’t get connection with my daughter that my heart craves.  But I can say in faith, just like the faith that King David had when his baby son died, that babies go to heaven.   I know that’s where Ava is and we will spend eternity together there with our Saviour.

” 22 He [King David] said, “While the child was still alive, I fasted and wept, for I said, ‘Who knows whether the Lord will be gracious to me, that the child may live?’ 23 But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me.”  2 Sam 12:22-23

Amen.

Ava’s Story

I’ve been meaning to write our Ava’s Story for a while.  Since I had to opportunity to write it out for our church newsletter I decided it was the perfect opportunity to put it all together and finally publish it here.  

“They are worried about your baby’s heart.”

This was not the news I was expecting when I answered the phone call from the midwife.  That afternoon I had gone for my routine 19 week ultrasound and in my hands was an ultrasound photo showing a precious baby girl.  We already had four children – so how could something be wrong with this pregnancy after four healthy ones?

Three weeks later Jason and I sat on the edge of our seats at in the pediatric cardiology department of our local hospital.   Even to our untrained eye the echocardiogram that had been done didn’t look normal.   Finally we were called in by the cardiologist and his first words to us were  “Let me show you what a normal baby’s heart looks like, and then I will show you what your baby’s heart looks like.”

All I could say was, “Pass the Kleenex.”

The Cardiologist explained that our baby had a serious congenital heart condition called critical aortic stenosis – where the artery coming off of her left ventricle was so small, it was affecting the left side of her heart.  The most probably outcome of this would be hypoplastic left heart syndrome, where the left side of her heart would stop functioning and she would be born with only a half of working heart.    She would need open-heart surgery right at birth if she survived the pregnancy.   Or we could abort her now, wait until she was born full term and then hold her until she passed away, or try an experimental procedure in utero where they would try to fix the problem.

We left that appointment feeling completely stunned, not really believing this was really happening to us.  I was very emotional and just wanted to go home and cry, but we had to make a decision on the experimental procedure quickly and we knew we needed to talk to one of our Pastors.    Thankfully our Pastor Leo met with us right away and prayed for us and told us that going to Toronto was a ‘no brainer’.

After a lot of prayer and talking things out with family and friends, we found ourselves at Sick Kids Hospital in Toronto a few days.   We had another echocardiogram and talked to another cardiologist. He explained this ‘experimental’ procedure and said that if it succeeded,   baby’s swollen left ventricle would heal and a minor valve repair surgery would be all she’d need after birth.  This procedure carried a huge risk to the baby, but we felt that this was her best chance, and God gave us tremendous peace, so we agreed to have the procedure done.

We walked across the street to meet with the Obstetrician at Mt. Sinai who would do the procedure.  After waiting over five anxious hours to see him, we were finally called in.

The baby was miraculously in the right position and so the doctor and his team wanted to do the surgery immediately.  In a whirl-wind, Jason rushed to have me admitted while I was being prepped.  I was nervous and excited, but mostly hopeful that this would work.  Cardiologists were called from Sick Kids Hospital and the team was minutes away from doing a procedure on our 24 week-old unborn baby girl.

God truly answered our prayers and kept that baby in the right position until she could be sedated, then going in through my belly and into her chest wall they preformed a balloon dilation on her aorta that was so tiny and closed it was hard to believe the doctors possessed the technology and ability to actually try to fix it.   In less than 9 minutes it was over.  We praised God for His goodness, believing that He was going to heal her. The next day after a quick ultra-sound the surgery was pronounced a technical success and we headed for home.

Then came the heartache. In the next few weeks and months as we kept going back to Toronto for more appointments and echocardiograms it became clear that the baby’s heart was not healing.  Even though everything had pointed to God’s hand in that intervention, her left ventricle was slowly dying. We had to face the fact that our baby would be born with only half a working heart.

All that kept going through our mind was why did God allow this to happen if it wasn’t going to work?   We still don’t have the answer for that question. But we just clung to these verses in Isaiah 40:27,28,30b when God asks the people of Israel why they question Him – their way isn’t hidden from Him, He is the everlasting God, His understanding is unsearchable!

And this is where our faith had to kick in.  It’s easy to trust God when things are going right, but now things were going wrong and it was so easy to turn to despair.  But knowing that God knew what we were going through and that His ways were higher than our ways allowed us to choose everyday to trust in Him.  To trust Him and put the life of this baby in His hands.    In the months leading up to her birth and impending surgery, all we felt we could do was trust that God would be glorified however this story played out, knowing that God loved this baby and had a perfect plan for her life.

Our daughter Ava Samantha Grace was born Dec  4, 2012 in the early hours of the morning at Mt. Sinai hospital.  I was prepared for them take her away immediately, but I was not prepared for her to be as purple as a blueberry!   Ava’s heart defect was depriving her of oxygen so they quickly whisked her away to stabilize her.   An hour later, after allowing my husband and I take a quick peek at her she was taken to Sick Kids Hospital.

Two days later I was walking beside Ava’s bed as they took her to surgery.  Jason and I wondered if we would ever see her alive again.  During the long and difficult six-hour wait, Psalm 23 was on my mind.   It seemed like Ava was walking through a valley where death was lurking in the shadows.   We placed our trust in God knowing that He is the giver of life and we prayed that He would be guiding the surgeon’s hands and holding her safely in His arms.

She survived the surgery!  But now back in critical care she looked more bionic than baby, there didn’t seem to be a square inch of her that wasn’t covered in wires or tubes. She was still on a ventilator and her chest was still open, the only thing covering her tiny beating broken heart was a piece of gauze.

The days were long as all we could do was sit by her bedside, waiting for her to stabilize.  We couldn’t hold her, only touch her hands and stroke her head, and pray for her to recover.    One nurse commented that we were coping so much better than other’s in our situation and we knew it because God was keeping our hearts focused on Him and His plan for our little Birdy.

Finally, almost two weeks after her surgery, Ava’s sternum was fully closed and things seemed to be headed in a good direction.  But God still had some challenges for our family to face.   The very next day, I took our daughter Sarah who was 5 at the time to a walk-in-clinic, only to be sent back to Sick Kids. It was there that she was diagnosed with Type 1 Diabetes.    This was a huge blow to Jason and I, and it was so hard to understand.  We were dealing with so much with Ava, and now we had another child with a life-threatening disease, a disease with a steep learning curve.   It was five days before Christmas and the stress on our family and our relationship was incredible and we didn’t know how we were going to cope.   It was hard to keep it together in front of the children, but thankfully all they were thinking about was Christmas.  To be honest I didn’t want anything to do with Christmas, there didn’t seem to be much to celebrate that year.  But once again, God showed us through our children’s joy on Christmas Day that we still had our family and His love and those things were worth celebrating.   Going forward we decided to divide and conquer.  Jason took on the diabetes education and care for Sarah and I concentrated on Ava.

We were finally able to take Ava home February 11th after 68 days in hospital.  We had battled feeding intolerance and heart issues for our whole hospital stay, but the staff was now confident we could care for her at home.   It wasn’t home for good and we knew that.  Ava would need another heart surgery when she was around 6 months old, but for now we were thrilled to move back home and have our family all together.

We loved having Ava home, but it wasn’t easy!    Her care was demanding, and her feeding and medication schedule kept me busy almost 24 hours a day.   The doctors had warned us that many babies with this defect don’t make it through these first months, so we tried to be diligent in her care and were in touch with her heath care providers daily.  Thankfully so many people pitched in to help to keep our home running smoothly and our church organized meals for us and my mom would often stay and Jason  was keeping good care of Sarah and the other kids.   Our family had adjusted well to this new crazy life of having Ava home, the kids helped out when they could and showered Ava with love.

Unfortunately in mid April, Ava was hospitalized in London with what turned out to be influenza B.   She was quite sick and even when she got home things just didn’t seem to be right, her breathing was laboured and she would get clammy.   All we could do was to hope and pray that  God would heal her little body so that she would be healthy enough to get her second surgery which was coming up.

On May 5th  Ava was well enough that we could take her to church to have her dedicated.  Our Pastor Norm prayed for her and we were so encouraged by our church family.     But five days later we were back at Sick Kids for a routine clinic visit and it was then that they said her heart function was decreasing and we would have to stay, they were going to admit her.

It was now May 10th, Jason’s 40th birthday , Ava was five months old and I couldn’t believe that she and I were now back in Toronto.   Jason and the kids were still in London so our family was separated once again, however we were confident that it would not be for long.  The doctors had been very positive and were saying that if Ava could have some testing done on her heart in the upcoming week, then they would plan on booking the surgery she needed for the week after.  I was envisioning a speedy recovery for Ava and being back at home that summer as a family reunited.

Jason came down to be with us for one of Ava’s major tests – a heart catheterization.  She would be put under and a camera inserted into a blood vessel in her thigh where it would travel to her heart so the doctors could do some diagnostic testing.   We were confident that the results would be fine, and were totally unprepared when the surgeons came back with bad news.   Ava’s one and only heart valve was terribly leaky.  It was the culprit behind her poor heart function and it was raising the pressure in her lungs, basically removing the possibility of surgery.   This was devastating not only for Ava’s sake, but I started to see my plans for returning home and reuniting our family start to crumble.  The medical team started tossing out the words ‘Heart Transplant’ and these words soon became our reality.

On June 11th, when Ava was 6 months old, she was officially listed to receive heart transplant.  But this wasn’t a cure, the medical team were very clear that receiving a heart transplant is like trading one heart disease for another.  And not only that, but waiting for a heart could take from 6 months to a year.  A very long time, especially considering Ava’s deteriorating condition.   Jason and I were doubtful that she had a year to wait.

Thankfully were we able to get another apartment at the Ronald MacDonald House fairly quickly, so now our family was at least all in the same city, but we didn’t know how long our stay in Toronto would be.  Would we be there weeks, months, or even a year as we waited for a heart?   Ava wasn’t doing well and a few times we came close to losing her and we just kept praying that a heart would come fast.    Those were very tough days as I walked to the hospital each morning, not sure how I was putting one foot in front of the other.   Facing each day was becoming more difficult, but I never walked alone.  Each day, God would remind me of a verse or a song, or someone would call or come to visit or leave a message on our blog that would encourage my heart.    Jason and I knew that God was carrying us through each day and He was being so faithful

The end of July came and Ava was getting worse.  She was sleeping most of the time and it was clear she was in heart failure.  She was puffy as her heart couldn’t move fluid around her body, and even though she was on an adult size dose of diuretics, she was gaining fluid every day.  She needed help to breathe so she was on CPAP which was helping take some of the load off of her heart,  and she was on the highest dose of the heart medication that they could give her.   We were constantly talking with the palliative care team about how to keep her comfortable and how to prepare our children if something happened to her.  We were praying desperately for a heart which was the only thing that could save her, but it hadn’t come yet and time was running out.

Finally, on August 15, 2013 we had to say good-bye to our precious Ava.  God choose to heal her not by sending her an earthly heart, but by taking her up to Him and giving her a brand new body that would never hurt again.   It was bittersweet because although it was so hard to say good-bye to daughter – it had been harder still to watch her suffer and we felt God’s peace in knowing that this had been His perfect plan for her all along.

It’s been over 18 months now since we said goodbye to our precious little Birdy.  Often I think about how life would be if we had her still and my heart aches for the loss, but deeper down, I know that my heart is healing.    We have no bitterness or anger and looking back all we can see is God’s faithfulness and goodness to us, and we look forward to the day when we will see our Ava again.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

This is Ava’s verse that we were given and it’s now on her gravestone.  We hold on to this verse knowing that even though Ava’s heart did fail,  God is now her reality and our strength.

Quick jot…

Today was an OK day for Ava.  I got to the hospital early this morning because I didn’t want to miss any of her awake time, and I was rewarded by a happy smily girl, who gave me a nice snuggle.   I took her for a walk around the unit, but she tried quickly and wanted to go to sleep right away.   It turns out that her liver is a bit enlarged again which means that yet again she is getting fluid over-loaded.  I thought that it might be that way yesterday as she just didn’t have the energy that she did have the previous week and her heart-rate has been higher than normal.   So this morning they decided that she needed another dose of metolazone – the heavy-duty diuretic they give her once in a while.  It takes a while to work, but I’m hopeful that by tomorrow morning she will be feeling a little better.   She is such a little trooper and even though she still wants to sleep most of time, I just cherish the awake time we get with her.

And Aleeda is doing well… she is still sedated in the Critical Care Unit, and they are still waiting for her ‘new’ heart to regain all its function.   Apparently it’s not usual for a transplanted heart to lose some function after transplant, but we are just praying that the heart recovers all of it’s function soon.   Alleeda also still has an open sternum, so please pray that they can get her chest closed sooner than later, and that she and her new heart can heal quickly together.

And I apologize but it’s been a very busy day and I’m fading fast and so I need to sign off.  But tomorrow is another day and as always I will keep you posted!

Happy Birthday Erik!

Our Erik turned 10 yesterday, I can’t believe our first baby turned double digits and is getting so tall.   But since I can’t find the cord for my camera, I have no good birthday pic to show you right now… too bad.  But I’ll just say instead that we are so proud of Erik,  he is over-all just a great kid and smarter than Jason and I put together. 🙂

And he had an OK birthday.   He was a little down last night because even though it was his birthday, he didn’t ‘feel’ like it was, and he wanted to go home.  Poor kid.   I probably should have done a better job of making it special.  But thankfully our friends the Seabrooks drove up to see us last night and we had a wonderful birthday dinner and she brought cake and the kids stayed up late and we had a great time.  But it’s still not the same as being home and I get that.  It’s just that this is where God has us right now and we gotta learn to be content.

Thankfully our little miss Ava is doing well.  She has had a good couple of days and has been very smiley and happy.   She is till having issues with her temp & heart rate rising, which might all be related to her terrible heart function.  But there are a few other kids in her in the hall-way that are doing the same thing, so maybe they just have a strange bug.    But it’s not a bug they can find,  that’s for sure!   They are running the whole gamut of tests again today on Ava to try to pinpoint some type of infection, but last time everything they did this everything turned up negative so I would be surprised if they found something now.

But other than that she is very good and we are happy to be able to give a good report.

We hope everyone has a safe and happy Canada Day weekend!

Trying to mend

Well it’s seems it’s been an uphill battle for Ava to recover from everything she’s gone through.  Yesterday (Sunday) I was concerned about her in the morning, because she was breathing shallow and fast, and seemed so pale.  I was concerned enough to call the resident back in to have a look at her.   He at least could reassure me that she was ‘safe’ (stable), and that did help to relieve my mind.    As the day went on she did seem to get better, even though she just slept most of the day.   She was only up for two short bouts,  but had lots of smiles for daddy when he went to see her last night, so that was wonderful.  Anytime she smiles, I’m thankful.

Jason had to go out first thing this morning so I stayed here with the kids instead of going up to the hospital right away like I usually do, and when I called the hospital to check on Ava they said that they were a little worried about her as she was so pale and puffy.  I was able to tell them that she started the day off yesterday the same, but made sure to hurry over there as soon as Jason got back.   She was more awake and alert today, but definitely puffy and so today they concentrated on reducing her fluid intake and trying to diurese her.   The extra fluid makes it harder for her to breathe and probably makes her feel crummy.     They also did blood work and it seems her hemoglobin in low so she is going to need a blood transfusion, but they will wait and do that tomorrow. Oma and Opa were able to stop by today to see her and again, she had lots of smiles for them, but didn’t stay up too long after that, smiling for her is exhausting. 🙂

She is still on oxygen and definitely still on her IV heart meds… I’m not sure she will ever be able to wean off of those.   But hopefully she will recover from all this soon and then we can continue doing all the checks needed for her transplant work-up.    Once all testing is done we can sit down with the transplant Dr’s and see what they have to say about listing her for a heart.

So that is what we are up too.  Just day by day, trusting in God and seeing what He has in store and waiting for our Ava to mend.

Oh drat this cold…

OK – so it’s been a crazy week and it’s all because Ava has a cold.  That’s right, a plain old-fashioned regular cold, but she doesn’t seem to be able to kick it and it’s causing us problems.

And I wrote about how we ended up in emerg on Monday because I noticed Ava was working a little harder to breathe, but were sent home and told to watch her closely.

Then Tuesday Ava was Ok, she was still coughing,  but then Wednesday just before dinner I started to clue in that Ava wasn’t doing so well… she was sweating constantly no matter what she was doing, but her feet stayed cold and were dusky looking, so that was rather worry-some.   When Jason came home and looked at her,  he asked right away if I was going to take her in,  so I called Sick Kids.   The cardiology Fellow on-call told to take her in right away, so we found ourselves back in emerg.

The Dr who was on that night was really great and was so knowledgeable about Ava’s cardiac condition.  He felt that Ava’s fluid levels were a little low and needed topping up.  His reasoning was that with her breathing quicker because of her cold and then with her sweating so much, her fluid levels had probably dropped a bit.   The lack of fluid was affecting her circulation and her heart wasn’t able to profuse her body with oxygen properly.   And so they upped her fluid by giving her an entire feed of just Pedialyte and it worked.   Very soon after her feet were pink again and she just looked better all over.   And not only did we have a great dr that night,  the emerg nurse we had that night attends our church!   We had never met him before, but he figured out that this baby Ava was the Ava from the prayer list.   And since I had been really worried about Ava that night,  it was cool that God arranged for someone to be on who knows what we are dealing with.   And then because our little Birdy looked so great right away and her blood-work came back fine, they swabbed her nose just to see what bug she had and sent us on our way.   That was definitely a record-breaking fast ER trip as we went there and were back home in three hours,  pretty amazing.

However Thursday afternoon I was holding Ava and she was sweating like crazy again and she was huffing and puffing she was breathing so fast.   And so again I called Toronto and again they told me to take her in.     And because they had already been talking with the London cardiology team about Ava, they all decided that they would admit her so that she could be watched for the night.  So back to the ER we went.    And really Ava didn’t look that bad, definitely looked better than the day before, but whenever Ava is doing something she shouldn’t,  they always worry about her heart, and they just don’t want to take any chances.

Avahospital

So we were admitted and Ava was hooked up to the heart monitor and sat monitor, and over-night all her numbers leveled out and looked great.   So thankfully this all doesn’t seem related to her heart function, it’s just her cold wrecking havoc.   After our London  Nurse practioner and a Cardiologist  saw her in the morning, and one of her meds got upped to hopefully help with her sweating,  they said that we could go after we got some blood work.

Not blood work!  Two words I dread to hear in reference to Ava.  And it’s not just because no child likes getting their blood taken, it’s just that trying to get blood from Ava is horribly difficult.  Mainly because as a hypoplast,  her heart couldn’t pump as hard in utero and so she has tiny blood vessels compared to other babies and they aren’t really close to the surface.  So often she gets poked repeatedly before they can get blood from her and it seems to be  very traumatizing for me… and probably Ava too, haha.    So the nurses  started trying, and they tried first tried to get blood from her temples… her temples????  Um yes, although I’ve never seen that done before.   But they tried and it must have hurt like crazy because Ava cried so hard I thought she would burst a blood vessel.     After they tried both sides of her head with no luck, they thought they would give her a break and call someone else in.

So the next nurse that tried though she found a good spot on her foot – but same thing, couldn’t draw back.   It seems that when Ava cries she does a full body clench and they don’t seem to be able to pull back any blood.  But then when they give up and pull out the needle, Ava relaxes and starts to bleed.  Go figure.    So after they stanched the bleeding from her foot,  they decided that after the next poke if it didn’t work they would give up – and so they tried the top of Ava’s wrist and they managed to get a tiny bit of blood from her.  Thankfully they gave up and that was that.  I don’t think I realized how worked up it made me seeing Ava in that much pain until later that night when we were home and Sarah and William both hurt themselves back to back.    I kinda lost it and told them that no one was allowed to hurt themselves anymore that night because my nerves were shot and I couldn’t handle it.   Nice going mom. 🙂

So now we are at home again and we are praying that Ava will kick this cold before it stresses her out more.   The London team alluded to the fact that Toronto might want to delay her catheterization because she is sick,  and that thought is depressing.    Ava needs her next surgery to get stronger and if we have to delay her cath, then we also delay her surgery.   And that would be hard to take as it could push her surgery into the summer and leaves her longer in this place were she isn’t very strong.

But again we get all our strength from God, all His peace and reassurance and hope.  And even with this cold of Ava’s and the awful weather that isn’t helping,  we know that we can get through yet another day by God’s grace alone.  And He is holding Ava in his hand and whatever happens it’s going to be OK.   But I will say it again,

Drat this cold!!!

We’re Home!!!

Wow, after 7 weeks of being away, we are finally home and it feels wonderful!!!!  We thought we would never get out of Toronto on time yesterday, because there were alot of lose ends to tidy up as Jason checked out of the Ronald MacDonald house and I tried to leave the hospital.     And even though Ava didn’t love the trip home – her first trip in a car seat – we still managed OK.  And I think Ava likes home.  I sure do… I can finally relax!    Well kinda, in between giving Ava meds 8 times a day and pumping and trying to nurse her and then tube feeding her 8 times a day,  we are a little bit busy over here.

But we were happy to see our wonderful neighbours actually missed us and we were welcomed home by this…

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And there were balloons and streamers all over our fence outside and a gift inside and another poster…

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I will say it again, we have great neighbours.

And we also had to put up a sign on our doors asking for healthy visitors only please… which feels a bit snooty, but the fact is that Ava just can’t get sick – because if she does she will end up in the hospital.  Even tonight she was breathing a little bit too fast so I had to call the Dr on call at Sick Kids and thankfully she started breathing slower, but I have to keep an eye on her and he was talking about adjusting her medication, but even something as simple as that could land her back in the hospital which is something we wish to avoid for obvious reasons.

So we thank God for bringing us home and together again, and pray extra hard that God will keep Ava healthy until her next surgery.

I get to sleep in my own bed again tonight with my baby right there with me… hurrah!

She’s a month old!

Ava Samantha Grace is now one month old, congratulations sweetheart!

And it’s been a super-duper busy day, that’s for sure. Remember how I said that they moved us to the 4th floor into the step-down room? Well after just a single night in that room – we moved again – this time to our own room, crazy!

So we found ourselves installed in a room that has a bathroom and a bed (if you can call it that) for me, and now I am taking on a huge amount of Ava’s care. I change all her diapers, I comfort her when she cries and I’m even learning how to feed her through her NG tube… did you know that every time you feed someone through a nasal gastric tube you have to insert air into their belly and listen with a stethoscope for a ‘pop’ to make sure it’s the in right place? I was surprised. But I was able to give her some of her meds today through her tube. It’s a little daunting, but baby-steps is how we travel these days.

And yes, I’m a little over-whelmed and stressed. We had a good routine down and now everything has changed again. With me staying at the hospital full-time Jason is now doing even more on his own with the other kids (and doing an amazing job by the way). Not that I was doing much before to help him, but at least I was still sleeping at the Ronald MacDonald House, and spending time with kids. Now that I’ve basically moved into the hosptial I’ll only be visiting them there, I’m sad.

But Ava is doing good from my perspective, she did have to go on another blood pressure med and apparently one of her heart valve’s is leaking but its all stuff we take in stride.

Oh, and Monday the Occupational therapist will come and test Ava to see if she can swallow without choking… they are a little concerned because her vocal cords seem to be paralyzed (this can happen in surgery) and that can make swallowing tricky, that combined with her quick breathing might make it a huge feat for her, but if she can swallow, we can start to try oral feeding, so please please pray!

And talking about prayer – I was getting pretty worked up tonight and upset but Jason prayed for me and reminded me once again to have faith. In God. Knowing that He is allowing this and has a plan.

So even now -one month in and trying to adjust to change and not knowing when we will be coming home and I am feeling like maybe I can’t take anymore -I’m so glad that God has placed people in my life to remind me and encourage me that He will never forsake me. And I know in my heart its true.

So….

Today is another waiting day.  With the opening and closing yesterday Ava started to bleed from her chest and bled all night so they’ve been having to give her blood.

They have taken her off her blood thiner so that she will clot – but thats a bit risky as she needs blood thinners so that the shunt in her heart doesn’t get clogged up and stays functional.

And then Jason has left now to go home to get the kids so its just me here today and wow – I’m emotional!  🙂

So I’m sitting right now in the Chapel here at Sick Kids because I just had to pray for strength and faith – my feeble human self is getting the best of me but thankfully Isaiah 40 reminded me yet again what an amazing God we serve.

But please pray for Ava and for me today – my heart is hurting for her today – my poor baby having to go through all of this – its hard to watch.

But she is stable now and hopefully we will have some better news towards the end of the day.

A little glimps…

Just wanted to give you a peek at what we see when we are sitting at the foot of Ava’s bed….

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And yes – there is a baby in there!

We has a great nurse yesterday which put a note on the gauze that is covering her open chest…

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It’s just a little thing, but it makes me smile.

I love you my Birdy!!!